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Our policy work

Our policy work focuses on improving the experience and outcomes of bladder cancer patients in the UK. You can read our manifesto for bladder cancer in the downloads section below. 

A group of dedicated patient advocates represent Fight Bladder Cancer externally. They provide feedback on FBC's advocacy strategy and activities, they lead on parliamentarian outreach across the UK, they support awareness raising activities especially in May and share their personal experiences of bladder cancer to help influence change.

 

Policy achievements

Exemplar report

We launched the Exemplar report with a policy roundtable discussion. This research highlighted that the lack of specialist staff leads to problems with quality of life and sexual wellbeing for bladder cancer patients. We called for more investment in the bladder cancer workforce so patients can receive the care they need and deserve. We identified many other areas for improvement which will inform our policy work going forward.

Access to immunotherapy

When bladder cancer maintenance immunotherapy treatment was not recommended by NHS in England, we expressed our disappointment, called for discussions to resolve uncertainties around cost-effectiveness, and submitted an official comment.

NHS England

Fight Bladder Cancer shared stories of the hopes and experiences of people living with terminal bladder cancer at the recent NICE appeal of immunotherapy for untreated PD-L1-positive locally advanced or metastatic urothelial cancer when cisplatin is unsuitable.

Scotland

The Fight Bladder Cancer Scottish Steering Group finalised its Scottish Development Plan, which will enable the charity to register with the Office of the Scottish Charity Regulator and seek funding for a Scottish Development Officer.

Medicines and Healthcare Products Regulatory Agency

Fight Bladder Cancer responded to the Medicines and Healthcare Products Regulatory Agency consultation on the role that patients could play in the UK's new regulation of medical devices. We reminded them that patients are the ultimate beneficiaries of many medical devices, with unique experiences and insights, and must be involved in the consultation process.

Innovative Licensing and Access Pathway Patient Reference Group

We were selected to join the Innovative Licensing and Access Pathway Patient Reference Group, which was established to ensure that patient views are an integral part of delivery the Innovative Licensing and Access Pathway ambition. The Patient Reference Group will provide their expertise from the wider patient perspective, particularly in relation to the Innovation Passport designation stage, Target Development Profile stage and the specific patient engagement tool of the toolkit.  The Patient Reference Group will work with the Medicines and Healthcare Products Regulatory Agency, the Scottish Medicines Consortium and the National Institute for Health and Care Excellence.

Urinary tract infection in adult women

We submitted feedback on the Scottish Intercollegiate Guidelines Network’s consultation on ‘Management of Suspected Bacterial Lower Urinary Tract Infection in Adult Women’. We are pleased to see that it includes the following statement: ‘If symptoms do not go away within a few days, or you are distressed by more severe symptoms or have repeated episodes within a short time, then get help from your healthcare professional.’

Health and Select Committee inquiry into cancer care

Fight Bladder Cancer endorses Cancer52's Response to Health and Select Committee Inquiry into Cancer Care.

Highlights: 

  • there are no regular measures of the extent of awareness and attitudes towards less common cancers
  • data is not always fully disaggregated for less common cancers, which stymies the efforts of cancer charities
  • staging data for 2019 will not be available until October 2021. All cancers report missing stage data and sometimes this is a significant percentage. For example, 17% of bladder cancer cases in 2018 were not registered, compared to only 8% of breast cancer cases.

Key recommendations:

  • NHS England should establish a Rare and Less Common Cancer Taskforce
  • published cancer data must be fully disaggregated for all cancer types
  • the recommendations of NHS England’s Task and Finish Group on Psychosocial Support should be implemented in full
  • the Government should invest in a £500m community fund to support charities.

Get involved

There are lots of ways to get involved in our policy work.

Policy downloads

Here are some of our policy documents for you to download.

To see a full set of our downloads please see our Downloads page.

Get in touch

We’ve tried to make the information on this site as accurate as possible. Whilst we have support from medical professionals to review the general medical content of this site, please remember that only your medical team can give you specific advice about your symptoms or illness. Fight Bladder Cancer is a registered Charitable Incorporated Organisation in Scotland (SC051881), England and Wales (1198773), and was initially established as an unincorporated charity in England and Wales (1157763). It also operates in Northern Ireland.